I've been MIA for a week - out of town for my son's Army AIT graduation followed by 6 nights with my sister's family and some time with an old high school friend. I'm glad I was able to spend time with them.
Overall I have not been feeling too well. I have nausea a lot, and I am not on any treatment right now. I expected that to go away, but it doesn't. I've never had it stay more than a couple weeks after stopping treatment. My BP had settled down after stopping Zaltrap, so I quit my BP meds and stopped checking BP twice per day. Before I left for my trip, I almost didn't go. I felt so horrible. I told my husband that I thought this was the end coming - that I am on my downhill slide and don't know how long I will live. Then I decided no matter what, I had to go see my son graduate, as it might be the last big event in his life that I am alive for.
Before heading to the airport, my head and chest hurt so badly, my tinitus got really awful, my heart was racing, and I felt like vomiting. I decided to check my BP. Sky high! After taking BP meds again, I did feel quite a bit better (although not good). It made enough difference for me to get through things without worrying I am dying. Whew! I am having trouble controlling BP - one day it is ok, and the next it won't stay controlled, even with my max allowed BP meds and diuretics. Somehow either the Zaltrap really messed me up permanently, or I have tumors pressing on something that is causing BP issues.
My core feels like it wants to explode - I feel like I have quadruplets growing in me or something. It is really weird. The pressure is extreme, pushing out on my ribs, and out on my abdomen. I'm guessing it is the double pleural effusion mixed with the ascites. It seems that I only got about 5 good days after having my lung drained. I've finally started to have a little appetite, and once I start eating it is great, but if I eat much at all, I do not feel well. No matter what I eat or drink, I get severe gas (mostly trapped and burping, but also passing out the other end). Sometimes I think I need to have a bowel movement, and then it is all just gas - lots of it. Does this happen to anyone else? It seems to be ongoing since I had the CT colonography. I can't lie flat or I can't breath and the pain is severe. I have a very hard time finding a comfortable position. So trying to sleep at my sister's was tough. I REALLY missed my adjustable bed while I was gone for the week. I got home last night and actually slept for more than 15-20 minutes at a time!
I wonder if others had these weird issues as disease progressed? I hate to be such a whiner, but I am mostly miserable. I push myself for the sake of friends and family, but my pain levels are a bit high and I am completely uncomfortable all the time, and have no energy. I can't walk far or stand long - I can't get enough air, my heart rate climbs, and I come close to passing out. Even with cancer and chemo fatigue, I've always managed to be pretty active when I am off treatment. Not this time. I am really frustrated. Anyone else extremely fatigued even off treatment?
Usually I am "out there" with my feelings and facts, but find that I am not telling most family and friends how bad I feel now. I just try to smile and push on when I am around people, and collapse when I am not. They all expect me to be doing well since I am off treatment, and so do I. There is nothing anyone can do for me, so I wonder if there is any point in letting them know how miserable I am? I do think I am getting much closer to the end...
I read through postings, but I was so far behind that I am not remembering them all right now. Yeah for the person turning 50! A big milestone for those of us with cancer - especially if we weren't expected to make it that far. I had two primary cancers prior to 50 and was not expected to live past 48 or 49, so 50 was a big one! And I'm now 51! My friends all piss & moan about turning "old" and 50 and I want to slap them up. CELEBRATE!!!! Old is better than the alternative (especially for those in relatively good health)!
I hope you are all able to spend some time with family and/or friends through the holidays, and have enough quality of life to be thankful and appreciative for Thanksgiving and beyond.